The Rare AutoImmune Rheumatic Disease Alliance (RAIRDA) brings together @LUPUSUK, @wearesruk, @vascuk & @SjogrensUK to campaign for rare disease patients.
Joined March 2018
- Tweets 1,158
- Following 811
- Followers 867
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167 Photos and videos
Pinned Tweet
Feb 19
We're on Linkedin! For all the latest from RAIRDA and our member charities, give us a follow➡️ linkedin.com/company/1113549…
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RAIRDA retweeted
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Mar 4
RAIRDA welcomed the publication of the England Rare Diseases Action Plan 2026 and the inclusion of the quality standard for rare diseases. We are proud of this important piece of work, developed collaboratively by the rare disease community.
Read more 👇🔗
rairda.org/nice-quality-stan…
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RAIRDA retweeted
Feb 26
If you live in the UK and have a rare condition, please take part and share. Together, we can drive better support at work.
🔗 forms.office.com/e/dwgBKrBPY… #RareDisease #WorkAndHealth
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Feb 27
RAIRDA welcomes the publication of the @NICEComms Quality Standard for Rare Disease. This quality standard marks the first developed collaboratively between NICE and the patient community
nice.org.uk/guidance/qs214
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Feb 27
The development was led by the rare disease project group following discussions in the UK Rare Diseases Forum, and has centred the voices of those with lived experience throughout the process.
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Feb 27
This quality standard informs standard of care and enables people living with rare diseases to know what good care looks like. It sets standards that if met could improve outcomes across the rare disease pathway.
Read more about our involvement here ➡️ rairda.org/nice-quality-stan…
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17 Nov 2025
Information and support are vital for people living with rare diseases, yet it can be difficult for people to find information they can trust. The Rare Disease Action Plan recommends signposting patients to PIF TICK-certified health information.
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17 Nov 2025
The purpose of this survey is to understand the barriers rare disease patient organisations face in producing health information and joining the PIF TICK certification scheme. The survey is being run by PIF on behalf of DHSC.
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17 Nov 2025
Please complete the survey if your organisation is not PIF TICK certified ➡️
surveymonkey.com/r/ZHD8JPP
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28 Oct 2025
Earlier this month we attended @mabonapgwynfor's Senedd event on finding common ground in rare diseases. A valuable opportunity to discuss the findings of our Rare Care Matters report and recommendations for improving outcomes for people with RAIRDs with MSs and sector leaders.
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RAIRDA retweeted
3 Sep 2025
From unexplained symptoms and dismissed concerns to a diagnosis that reshaped everything, Jill’s journey with Sjögren’s is one of resilience, creativity, and quiet strength.
Read Jill’s full story on the Patient Stories page of our website
#sjogrens #sjogrensuk #sjögrens
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14 Aug 2025
We recently took part in an insightful consensus workshop, as part of a wider project focused on developing a quality standard for rare diseases. We look forward to progressing with this key project to make a real positive improvement on the lives of people with rare diseases.
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7 Aug 2025
Find below some recent updates including RAIRDA's statement to the 10 Year Health Plan for England and recent engagements with parliamentarians. We will continue to advocate for better outcomes for people with RAIRDs in the UK. Find more information here ➡️shorturl.at/QRvAy
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7 Aug 2025
Thank you to @JamesEvansMS for taking the time to meet with us last month and being a champion of RAIRDs. We took the opportunity to talk about the implementation our our Rare Care Matters report recommendations in Wales.
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7 Aug 2025
We thank @JimShannonMP for taking the time to have ongoing conversations with us and championing RAIRDs in Parliament. Our discussion centred on our Rare Care Matters report recommendations, our work with the quality standard for rare disease and recent policy developments.
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5 Aug 2025
A new study is looking at what NHS support is needed by people with #Sjögren’s, #Lupus, #Myositis, #Vasculitis, #Behçet’s & #Scleroderma.
📢 Your experience can help shape the findings.
🔗 tinyurl.com/RAISE2025
#RAIRDA #RAREdisease #PatientVoice
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1 Aug 2025
Improving quality of life and empowering everyone with greater knowledge and support are crucial themes in our Rare Care Matters report. Implementing RAIRDA's recommendations is key to improving care for patients with RAIRDs.
Click here to learn more➡️rairda.org
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